title: Quality of life of young adults and adolescents with chronic kidney disease.
abstract: OBJECTIVE
  To elicit utility-based quality of life (QOL) in adolescents and young adults with chronic kidney disease (CKD).
  
  
  METHODS
  A cross-sectional study was conducted among patients aged 12-25 years with CKD stage 3-5 and 5D from 6 centers in Australia. QOL was measured using a visual analogue scale, and 3 utility-based QOL measures: Health Utilities Index Mark 2 and 3 (HUI2/3), Kidney Disease Quality of Life, incorporating the short form (SF)-12 transformed to SF-6D, and time trade-off (TTO). Multiple linear regression was used to define predictors for TTO QOL weights, SF-6D, and visual analogue scale scores.
  
  
  RESULTS
  On a utility scale, with extremes of 0 (death) to 1 (full health), the 27 participants had a mean TTO QOL weight of 0.59 (SD = 0.40), HUI2 of 0.73 (SD = 0.28), HUI3 of 0.74 (SD = 0.26), and SF-6D of 0.70 (SD = 0.14). QOL weights were consistently low across the 4 utility-based instruments with widest variability in TTO responses. Mean QOL weights were higher among predialysis participants. The HUI2 indicated variability in the domain of emotion. From the Kidney Disease Quality of Life measures, decrements were observed in all QOL domains though dialysis patients reported a significantly higher burden attributed to kidney disease.
  
  
  CONCLUSIONS
  Adolescent and young adults with CKD report low QOL values. Their utility-based QOL scores imply they are willing to trade considerable life expectancy for perfect health. Holistic care to improve QOL and minimize disease burden are imperative for optimizing health outcomes in young people with CKD, particularly those on dialysis.
authors.affiliation: Center for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia; Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia. Electronic address: allison.tong@sydney.edu.au.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
authors.forename: Germaine
authors.initials: G
authors.lastname: Wong
authors.forename: Steve
authors.initials: S
authors.lastname: McTaggart
authors.forename: Paul
authors.initials: P
authors.lastname: Henning
authors.forename: Fiona
authors.initials: F
authors.lastname: Mackie
authors.forename: Robert P
authors.initials: RP
authors.lastname: Carroll
authors.forename: Kirsten
authors.initials: K
authors.lastname: Howard
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
mesh_terms: D000293:Adolescent; D000328:Adult; D001315:Australia; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D016014:Linear Models; D008297:Male; D011788:Quality of Life; D006435:Renal Dialysis; D051436:Renal Insufficiency, Chronic / Q000503:physiopathology / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: CKD; Chronic kidney disease; HUI; HUI2/3; Health Utilities Index; Health Utilities Index Mark 2 and 3; KDQOL; Kidney Disease Quality of Life; QOL; Quality of life; SF; Short form; TTO; Time trade-off; VAS; Visual analogue scale